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  • I need advice

    Hello,

    European guy here, 25 years old, I read most of the stories presented on the forum, and I was pleasantly surprised and that gave me hope too.
    I am not in the best situation right now, and I would need an opinion on what has happened so far ( about my treatment ) and what is to come.

    I will start presenting my story:

    It all started on April 2 when I first spat blood. I thought it was from the stomach, but I found out in the emergency room that it was lung metastases. The following days I was looking for the best clinical solution I could find in Europe, and between Austria, United Kingdom and Turkey I chose Turkey because of the lower costs. What made me very happy because I knew that the medical system in America is very good was the fact that the Anadolu clinic is in partnership with Johns Hopkins Hospital.
    After quick investigations (PET CT, ultrasound) I found out that I have testicular cancer ( 60% embryonal carcinoma and 40% teratoma ) with metastases to bones, liver, lungs, retroperitoneal lymph nodes.
    Tumor markers did not look good either, at first having 160.000 HCG.( If it's important i will check for AFP too, LDH was between and 600-700 at that time ).

    Treatment:
    I say it in more detail because it may be different from what is normally done (I hope not)

    I did one cycle of BEP ( 5 hours for 5 days ) with two bleomycin doses of half hour at 8th and 15th day.
    After the first cycle, I had orchiectomy on my left testicle, continuing with two more cycles of BEP.
    After the first two cycles of BEP the HCG dropped to 141, AFP and LDH still had higher values at that time ( liver, bones metastasis dissapeared )
    After the third cycle of BEP the HCG dropped to 32, AFP and LDH were within normal limits.

    On July 13 ( one week ago ), I had a meeting with the doctor where he stayed and thought for a few minutes and came to the decision to do two more cures with VIP. ( 7 hours for 5 days )
    Now I am writing this after the first cure of VIP wondering if the doctor's choice was the best (I mention the fact that the VIP feels a rock harder than BEP).
    He mentioned that he wants HCG to be within normal limits, the next step being RNPLD operation.

    Is it currently gratifying that HCG has reached 32?
    Honestly, I am very afraid of what is to come and I need advice, really sorry for any typos.

  • #2
    If you are at Anadolu Clinic, have you seen Dr. Tinay by chance?

    Typically, in the US, with the liver and bone metastasis BEPx4 rounds or VIPx4 rounds would be used. It sounds like you had BEPx3 and then switched to VIPx2? If deciding against continuing to use bleomycin changes to VIP have been seen. I have seen more than the 4 cycles used internationally so the 5th cycle (the second fo the VIP, doesn't seem completely unreasonable). So far it sounds like you have had a great response so far and that perhaps they are hoping with the 5th cycle the beta-hCG will drop. One could also wonder at 32 if the beta-hCG could be related to hypogonadism (low testosterone) as well.

    Mike
    Oct. 2005 felt lump but waited over 7 months.
    06.15.06 "You have Cancer"
    06.26.06 Left I/O
    06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
    06.30.06 It's Official - Stage I Seminoma
    Surveillance...
    Founded the Testicular Cancer Society
    6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

    For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

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    • #3
      Yes, he did the orchiectomy and will do also the RNPLD if I am lucky enough to have it.
      Last edited by alinc; 07-24-21, 12:01 PM.

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